neurofibromatosis cafe

A place to talk about NF, have fun and share.


3269667417_eb0347c6dc_oThe Texas Neurofibromatosis Foundation is sending a few of us to Washington DC, to speak to our Senators about Neurofibromatosis, in hopes of getting more support and funding for NF research. We leave Houston This Sunday, Feb 8th, return Wednesday, the 11th. When Susan Johnson, president of the Texas NF Foundation asked me to go with them, I was more then happy to be a part of this great opportunity to meet the Senators and show them how important it is that we have their support in the fight against this disorder. I know this trip will make a difference. Wish us luck!


February 3, 2009 - Posted by | neurofibromatosis


  1. Reggie, with your charisma and hutzspa and your story, they will be impressed and it will make a difference.
    Have a great trip!

    Comment by Bart | February 3, 2009 | Reply

  2. Thanks Bart.

    Comment by Reggie Bibbs | February 3, 2009 | Reply

  3. Dear Reggie
    Suzan has right to ask you to go at Washington. Good travel for you and your friends. I hope you will meet lot of VIP:your Persident, senators and important chanels and radios journalists. I wish this event will be broadcasted very much!
    As I told you you are a great ambassador for the neurofibromatosis people Good luck. Now I’m looking forward to know how was the travel Kind regards Francis

    Comment by Boyer-Madrieres.Francis | February 4, 2009 | Reply

  4. Francis I’m excited about the trip. I’m sure things will be terrific! I will be sure to talk about how it works out.

    Comment by Reggie Bibbs | February 4, 2009 | Reply

  5. I think you need to give us daily updates while you’re in Washington of the people you’ve met and talked to. I bet the hotel has computers you can use for a fee or perhaps you could use Susan’s.

    Comment by Lou | February 4, 2009 | Reply

  6. Great idea Lou. I’ll do that.

    Comment by Reggie Bibbs | February 4, 2009 | Reply

  7. I always wanted to do that, go to Wash D.C., at least be the photographer covering the event. Riggies goes to Washington.

    Comment by JohnP | February 4, 2009 | Reply

  8. Instead, I be here in Hawaii.

    Comment by JohnP | February 4, 2009 | Reply

  9. If staying in one of the hotels in Wash. D.C., they should have free internet connection, so maybe Susan will let you use her. Anyway a good time in the capital city. Tell them you are going to run in 2012.

    Comment by JohnP | February 4, 2009 | Reply

  10. Yes John I like the way you think. That would have been good to have you photograph.

    Comment by Reggie Bibbs | February 4, 2009 | Reply

  11. Hi there Everybody I have been drinking Starbucks

    Comment by Shelley | February 4, 2009 | Reply

  12. Reggie, we’ll have to get photographed in front of the capitol with Just Ask hats on.

    Do you know which senators (or their aids) y’all will get to talk to? Wish I had Barack’s email address. I bet he’d really like to meet you!

    Comment by Bart | February 4, 2009 | Reply

  13. Bart,

    I’m not sure who we will talk too. I bet we are really going to make a difference, and our Senators will want to help with our search for a cure for NF. You have a terrific idea about the photo in front of the Capital. We can make that happen. Maybe I will take an extra hat and shirt just in case I get to meet the President. I bet he would wear a JUST ASK T-SHIRT.

    Comment by Reggie Bibbs | February 5, 2009 | Reply

  14. Hey Bart did you tell Dr.Slopis about Washington DC. It will be my first trip there. I think he has clinic today. I’m sure he is busy seeing patients now.

    Comment by Reggie Bibbs | February 5, 2009 | Reply

  15. Anyone blogging today?

    Comment by Reggie Bibbs | February 5, 2009 | Reply

  16. Hey Reggie Im bloqqing today

    Comment by Shelley | February 5, 2009 | Reply

  17. Hi Shelley,

    Good to see you here. I’m blogging as well. We are talking Washington DC right now. Have you ever been? Have you ever thought about going? Did you see in the blog why I’m going?

    Comment by Reggie Bibbs | February 6, 2009 | Reply

  18. Before I forget, hope you will have a great time in Washington D.C. Give em heck….lol. I should have, I thought about it, but with my lay off, I forgot. I could have done some promo with “Just Ask” here in Hawaii.

    Comment by JohnP | February 6, 2009 | Reply

  19. John You have always been supportive from the start. We will give em all we have. Let’s hope and pray that we come back feeling good about what the out will be. We won’t know right away.

    Comment by Reggie Bibbs | February 6, 2009 | Reply

  20. HI Reggie No I never been to DC would like to go there read the topic Wish I could go with yall

    Comment by Shelley | February 6, 2009 | Reply

  21. Reggie do you like hot chocolate ?

    Comment by Shelley | February 6, 2009 | Reply

  22. Today is the 8th, hope your bags are pack. I suppose (its 7:30am hst), you are now on the way to D.C.. Dont take any wooden nickels.

    Comment by JohnP | February 8, 2009 | Reply

  23. I just dropped him off at the airport. He is sitting in the plane right now. I told him to have a bloody mary to relax but I have a feeling he’s not going to do it.

    Comment by Lou | February 8, 2009 | Reply

  24. I suppose Reggie is behaving himself, have not heard any breaking news from Wahington yet today.

    Comment by JohnP | February 9, 2009 | Reply

  25. hello from Washington DC. Busy busy busy. We covered a lot of ground. Took lots of photos. Dr. Moore was here and took photos as well. Bart if you could email them to Lou, I think he will post them for us. Tomorrow is really going to be a busy. I’m a good guy Lou. No breaking news. I will try to up load photos I have tomorrow.

    Comment by Reggie Bibbs | February 9, 2009 | Reply

  26. Hey, thanks for checking in. Did you have any trouble getting around? How’s the weather? By the way, we sold your desk today but don’t worry, you still have a chair. Have fun!

    Comment by Lou | February 9, 2009 | Reply

  27. Will there be a JUST ASK GATE or REGGIE GATE ?

    Comment by JohnP | February 9, 2009 | Reply

  28. It was great to tag along with Reggie, Susan Johnson (President if Texas NF) and about 20 other members of the NF coalition. this was all about NF folks and I think our (all of you) voices were heard. reggie worked hard: walking all around Capitol Hill and visiting our legislators’ offices. it’s all about finding treatments for NF and that takes $$$$$$. So we may be asking you to write some letters to your representatives. Great progress has been made and we have to keep up the momentum.
    reggie seemed to behave himself but I was only with him until 1PM so……..He seemed to fit right in with the Capitol Hill group.
    can’t wait to hear more from the man himself.

    Comment by Bart | February 9, 2009 | Reply

  29. Dear Reggie I’m looking forward that you narate us your trip to Washington and see the photos. You are right to work very much for the NF but don’t forget to take care about your health: It’s a time for the work and a time for the rest!
    Please be reasonable, I don’t want you have some poblems with your NF!!! OK?

    Comment by Boyer-Madrieres.Francis | February 10, 2009 | Reply

  30. After the senate approved $838 Billion, cant they come up with $20 Million for NF? It will be money for good use, and will not be wasted.

    Comment by JohnP | February 10, 2009 | Reply

  31. HI Everybody

    Comment by Shelley | February 10, 2009 | Reply

  32. Way to go, guys! You do us proud.

    Comment by Lou | February 10, 2009 | Reply

  33. Love the pictures! Reggie, Susan gives me an update everyday and you guys have covered a lot of ground and are making a difference. I can’t wait to hear more details. I know Susan is full of excitement about how positive everything is going. Thanks for going and can’t wait to see more pictures! You look sharp!!!!

    Comment by Cindy Hahn | February 11, 2009 | Reply

  34. Cindy what a trip of a life time. I was more then excited to got to Washington DC to lobby with the Texas NF Foundation. I’m still in Washington and will return home later today. I have more pictures to post and they will be done tomorrow. So much to talk about. Susan and I will have two other meetings in Houston.

    Comment by Reggie Bibbs | February 11, 2009 | Reply

  35. Reggie, will pick you up outside baggage claim. Call me when you get off plane.

    Comment by Lou | February 11, 2009 | Reply

  36. Hope you did not come by the way of baggage class……… I feel that way sometimes when I fly.

    Comment by JohnP | February 11, 2009 | Reply

  37. News Flash: Economic Stimulus Deal Reached
    Reggie returns to Houston
    Coincidence? I think not……….

    Reggie I know you were working behind the scenes on this on Capitol Hill. Congratulations on getting the Senate and Congress to agree! Were you by any chance able to skim off a billon or two for NF research?

    Comment by Bart | February 11, 2009 | Reply

  38. I hear the White House is counting its silver.

    Comment by Lou | February 11, 2009 | Reply

  39. I heard the US MINT is missing a sheet of paper with uncut bills.

    Comment by JohnP | February 11, 2009 | Reply

  40. reggie, now that you have your feet back on the ground will you give us a report or your experiences? you might also have come home with some ideas about how we can help (like writing letters to our representatives). I’ from the 60s so: let’s activate, let’s march…….let’s party!

    Comment by Bart | February 11, 2009 | Reply

  41. Reggie was a trooper walking all over DC for NF! Each office welcomed us and were full of questions & support!!! I expect great things this year to come from our efforts on the “hill!” For those of you who don’t know, the army’s CDMRP program has made all the difference in the world where NF research is concerned. The NF program is the second oldest to breast cancer – since 1996 this program has given over 200 million towards various NF projects across the country. Because of hard economic times, NF funds were cut in half last year. Please help us remind congress how important it is to continue funding NF research, as we are closer than ever to finding a treatment to stop the progression of NF! Keep an eye out on this blog. When we get the letters – Reggie & I will be asking you ALL to send them to your senators & house representatives! Together we can make a difference.

    Comment by Susan | February 11, 2009 | Reply

  42. I’am Back in town. The work doesn’t stop. It is just starting and we have a lot to look forward. DC was great and having the wheel chair was a great thing to have if the walking got hard for me. Thank goodness it didn’t. You will hear more about the trip as I get get caught up with your messages I received when in DC.

    Comment by Reggie Bibbs | February 12, 2009 | Reply

  43. Bart,

    Thank you for being there. I was really proud that you was a part of our group. I’m so thankful that Susan Johnson and The Texas NF Foundation for asking me to be a part of the Coalition. I met a lot of new friends who I intent to keep in contact.

    Comment by Reggie Bibbs | February 12, 2009 | Reply

  44. Welcome back Rep. Reggie Bibbs.

    Comment by JohnP | February 12, 2009 | Reply

  45. Thank you John.

    Comment by Reggie Bibbs | February 12, 2009 | Reply

  46. Well, I just now getting caught up on my blogging. I can see all of you have been taking cheep shoots. Well I have you guy’s know working on Capital Hill is not a easy job. I will have that report of my experiences on your desk Lou and Bart by noon.

    I’m working on job that Susan and I talked about. Information that we will include in our letters to congressman. We all will need to write letters and call to let them know how important it is that funding for NF is not over looked. We have a lot of promising treatment to look forward to.

    Comment by Reggie Bibbs | February 13, 2009 | Reply

  47. Would that be Central time or are still on Big-Shot Capitol Hill lobbyist time?

    Comment by Bart | February 13, 2009 | Reply

  48. Big-Shot Capital Hill Lobbyist Time of course! That is all that matters anyway. You can call me the Lobbyist.

    I wanted to say Bart that I was surprised to see how nice everyone was in DC. I loved it. The cab drivers the folks in the hotel made the time I spent there great!

    Oh by the way. I had visits to my website from The House Of Representatives. They are listing to us.

    Comment by Reggie Bibbs | February 13, 2009 | Reply

  49. There is the Secretary of State, Treasure, Defense, etc… How about Reggie Bibbs, Secretary of NF ?

    Comment by JohnP | February 13, 2009 | Reply

  50. Lou thinks that is a good as long as the White House keep counting its silver. What does he mean by that?

    Comment by Reggie Bibbs | February 13, 2009 | Reply

  51. Because when I visit Lou, he always miss things out of his house. Why it only happens when I’m there I don’t understand. I don’t have sticky fingers or deep pockets.

    Comment by Reggie Bibbs | February 13, 2009 | Reply

  52. # 48 & # 51: magnetic personality

    Comment by Bart | February 13, 2009 | Reply

  53. True true. Things just fall in my pockets. Bart when I see you again or talk I would like to know about Lovastatin, and Gleevec. I will call you maybe next week. I have questions.

    Comment by Reggie Bibbs | February 13, 2009 | Reply

  54. Sure Reggie, look forward to talking.
    I know little about Gleevac but Lovostatin may be interesting to this group. Lovostatin is a commonly prescribed drug for high cholesterol. A scientist in California genetically engineered a mouse with NF-1 that had some of the same types of spatial impairment seen in many human children with NF-1. Then they discovered that Lovostatin could “reverse” the deficits in the mice. Now there are some other researchers looking at the same drug in human children; no conclusion yet though. The DOD funded some of this research.
    Dr. Slopis and I are VERY interested in this drug, but it is not ready for prime time yet.

    Comment by Bart | February 13, 2009 | Reply

  55. Now that is VERY interesting. Seem like to me there shouldn’t be any question about it. But who am I to say. I will say I would rather try that then having surgery. It would be an answer to many prayers if there was a drug study at MD ANDERSON with that drug. I would only do a drug study and MD ANDERSON with doctors that have known me for years. Let me know if I can help in anyway.

    Comment by Reggie Bibbs | February 13, 2009 | Reply

  56. HI EVERYBODY Im here had 2 cups of Starbucks

    Comment by Shelley | February 13, 2009 | Reply

  57. I think Reggie is without internet this weekend. He is very pumped about his visit to Washington and can’t wait to tell everybody about it, especially the new friends he made.

    Comment by Lou | February 14, 2009 | Reply


    Comment by Shelley | February 14, 2009 | Reply

  59. Hello everyone hope all is well with everyone.

    Comment by ed port | February 16, 2009 | Reply

  60. Good Morning to everyone. Hello Ed happy to here from you.

    Yes I would like to keep the conversion going. I was reading over the information I received when in Washington DC. I’m excited about what I read. Maybe some can answer some questions. I would like to know when a drug like Rapamycin Lovastatin,and Gleevec is in Phase 1 or 2, What allows it to go in phase 2?

    Comment by Reggie Bibbs | February 16, 2009 | Reply

  61. Reggie, there is a very good webpage at MD Anderson that describes clinical trials. Specifically the link below explains the different Phases of a trial.

    Before Phase 1 trials there are usually “Pre clinical” studies either in the laboratory or in animals. Phase 1 is done primarily to determine safety of the new drug in humans and determine the maximum tolerated dose and the side effects. It is often done in patients with cancer who have not had a positive response to other means of therapy and are, therefore, at the end of their rope. Phase I studies are not done to see if the drug works. Phase II studies begin to determine if the drug works. The webpage explains it better than this so everyone who is interested should check that out (NCI and NHI also have excellent information).
    OK, back to my starbucks. It’s in my “Just Ask” mug and is getting cold.

    Comment by Bart | February 16, 2009 | Reply

  62. Thanks Bart. Time for my second cup. LOL. I will check out that link. I would like to the the thoughts of others that have NF. JP what do you think?

    Comment by Reggie Bibbs | February 16, 2009 | Reply

  63. Interesting.. from the time of Phrase 1 and 2, looks like up to 8.5 years, then another several years for Phrase 3. Lets see, I am xx years old, in 15 years I will be ?? .

    Comment by JohnP | February 16, 2009 | Reply

  64. Let’s see John, assuming you are using roman numerals, by my calculations you would be XXXV years old.
    Hang in there!

    Comment by Bart | February 16, 2009 | Reply

  65. How old would that be in dog years? Since we all are going to be in the dog house unless we keep talking about ME ME ME, and what a great person Reggie is. 🙂

    Comment by Reggie Bibbs | February 16, 2009 | Reply

  66. I will take that XXXV. Actually, I be more like LXXIII.

    Comment by JohnP | February 16, 2009 | Reply

  67. That is about my size as well.

    I’m going to set up an meeting with my local Representative because is wasn’t in DC when I was there. His office in DC was really nice and thought would be a great idea. I think all of us should do the same.

    Comment by Reggie Bibbs | February 17, 2009 | Reply

  68. Let me know when you are going Reggie and maybe I can tag along.

    Comment by Bart | February 17, 2009 | Reply

  69. Dr. Moore, that would be a very impressive show of force.

    Comment by Lou | February 17, 2009 | Reply

  70. I will be sure to let you know. That would be great. Susan and I are going to talk to the office to make sure we can meet with Sheila Jackson Lee or Al Green. Al Green is in my district. Sheila Jackson Lee might be in our district.

    Comment by Reggie Bibbs | February 17, 2009 | Reply

  71. I LOVE Al Green. I have all of his albums!!!

    Comment by Lou | February 17, 2009 | Reply

  72. Lou Lou Lou. Skip to the Lou. Not the same Man, but I’m sure he can sing just as well.

    Comment by Reggie Bibbs | February 17, 2009 | Reply

  73. I’m just getting on the blog. I’m busy behind the scenes. Working on setting up meetings with our local Representatives to help with getting funding for NF.

    Comment by Reggie Bibbs | February 18, 2009 | Reply

  74. Did you hear anything from Green’s office? Either Green would be great to meet w/! Speaking of celebs. I have some doodle packets from NF inc. We need to start asking celebs to do a little doodle . . . All for NF!

    Comment by Susan | February 19, 2009 | Reply

  75. Susan I will need to get some packets. I think I have a contact so that I can get a few.

    I called Congresswoman Sheila Jackson Lee office and should get a return call soon. I will call Congressmen Al Green’s office today. Did we speak to Renee?

    Comment by Reggie Bibbs | February 19, 2009 | Reply

  76. (_)? (_)? (_)? (_)? FRESH STARBUCKS

    Comment by Shelley | February 19, 2009 | Reply

  77. We didn’t see anyone in Green’s office last week. They were busy. We were just given Reene’s card as a contact. So just ask if we can still try to see someone to discuss NF funds. So make sure we speak to someone from the “defense” or “health” department. If there’s no one on a local level that can help in that capacity – push to see the top man, Sen. Green himself!

    Comment by Susan | February 19, 2009 | Reply

  78. I called Congressman Al Green’s office. I spoke to a very nice person. Before we set up a meeting we have a form to fill out, which will be emailed to me. They are two months behind. Don’t know how that will work. She told me the person we would meet with would be the top man if not the Congressman himself.

    Comment by Reggie Bibbs | February 19, 2009 | Reply

  79. Reggie and Susan, this is wonderful that y’all might be able to take your NF lobbying efforts directly to our representatives. It is that kind of grassroots efforts that got the Dept. of Defense NF research program started in the first place. Please let us all know what we can do to reinforce your efforts.

    FYI, some of y’all might be interested in the scientific agenda for this Summer’s annual meeting of the Children’s Tumor Foundation (aka, Nat’l NF foundation). It takes place over 3-4 days in Oregon. This shows that people ARE actually making progress on NF research.

    • Session 1: Updates on NF Clinical Trials
    • Session 4A: NF1 in Context: A View of Related Ras-MAPK Disorders
    • Session 4B: Basic Unraveling the Signaling Pathways of NF
    • Session 5B: Basic: Unraveling the Signaling Pathways of NF (continued)
    • Session 7: NF2 and Schwannomatosis: What’s New?
    • Session 8: Tumors in NF
    • Session 9A: Progress in Management of NF1 Bone Abnormalities
    • Section 9B: Novel cellular and animal models of NF
    • Session 10: NF Therapeutic Targets and Preclinical Drug Screening

    It promises to offer an exciting agenda integrating clinical and basic NF research.

    Comment by Bart | February 19, 2009 | Reply

  80. That sound like something that I would like to attend.

    Comment by Reggie Bibbs | February 19, 2009 | Reply

  81. I know it’s a bit late to comment and on a lighter I smell a movie script here? “Mr. Bibbs goes to Washington.”…’s got possibilities..

    Comment by cheryl | March 16, 2009 | Reply

  82. Never too late. Well you know what can I say. First Washington next Hollywood. I’m going to Hollywood. Thank goodness you can hear me sing that.

    Comment by Reggie Bibbs | March 16, 2009 | Reply

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